August 2024
I was diagnosed with cervical cancer in May 2022. Treatment consisted of 5 weeks of chemo, 5 weeks of external beam radiotherapy and then internal radiotherapy (brachytherapy). Unfortunately, my veins aren’t that good, so I had to have a PICC line to administer the chemo, but my vein wasn’t particularly happy about that either and it caused some pretty hefty blood clots. I had to be hospitalised with a nasty blood clot but, up until that point, I was really active during my cancer treatment with my horse, dog and work. Fortunately, the treatment did the trick, and my cancer had ‘vacated the building’, as I say.
Everything seemed to be heading in the right direction but in October, I started to get problems with my stomach. It started with just being uncomfortable eating a few things. Radiotherapy and chemotherapy can affect your bowels and appetite, but I was confused because that had all returned to normal. The pain started to increase when eating, and I think Christmas 2022 was the last time I ate a proper meal. The pain I felt from the Christmas dinner was so excruciating that it made for a pretty miserable Christmas.
During October and December 2022, I had multiple A&E trips due to the bowel pain. I contacted my radiotherapy team to ask why this could be happening. I was losing weight, and it was becoming apparent that there was something very wrong every time I ate. All I was told was to take Buscopan and try different types of diet. Buscopan did nothing, and after going vegan for a few weeks with no success, I managed to get a diagnosis from an A&E doctor of ‘colitis of the colon’ in December 2022. However, at a routine appointment, my consultant told me it wasn’t that; it was actually ‘radiation enteritis of the small bowel’.
The radiation I received to my cervix had to go through an area of my bowel, and unfortunately, it had damaged a 40cm section of it. I was finally referred to a gastro’ consultant and the dietitian team. It all took time to actually see someone, so I took matters into my own hands and researched the condition. I found that only a few foods didn’t cause pain and I started to live off mostly water, milk, white bread, plain Greek yoghurt, white meat and smooth peanut butter. Everything else that I would try was a gamble and sometimes didn’t cause pain, but mostly, I would be left doubled over for 24-48 hours in the worst pain you can imagine. I learnt to not eat, really, and went from 9.5 stone pre-treatment to 6.4 stone at my worst.
In May 2023, I insisted I be admitted to hospital. I was worried after a very bad week of pain and stuck in the bedroom that I’d never make it out. Once admitted, I went on to a Fortisip shake and powdered meal with milk diet. My new normal started to look better, and I put on some weight. Working was easier; I couldn’t really eat out with my family or friends but that was a compromise to be able to enjoy other activities with them again. I started to ride my horse more often and walk the dog further, but then in August 2023, what I thought was just a bad meal choice turned out to be something that would totally change my life. 
In August 2023, out of nowhere, I ended up with a [bowel] blockage, an abscess, and a perforation in my small bowel. The damaged 40cm of my bowel had finally had enough and very much told me so. I had to have an emergency operation to cut the bowel away and give me a stoma bag. During the 6-hour operation, they also found another 20cm of damage bowel further up, which they didn’t want to leave in. So then ‘Grot bag’ was born—haha.
Having the ileostomy operation and stoma has come with many obstacles for me. Due to the positioning, how thin I was going into the operation (I hadn’t eaten for 9 days prior), and generally how unwell I was, all contributed to a bumpy road of this next stage in my journey. I have short bowel syndrome and high output. I can’t maintain my own magnesium or hydration levels without medication and supplements, and I struggle a lot with the bag leaking due to the contents always being like liquid. I do get quite anxious if I’m not within easy reach of a toilet; journeys have to be well thought-out shall we say.
‘Grot bag’ has enabled me to enjoy most foods again, have a foodie social life again and I’m slowly but surely putting weight back on—currently sitting at around 7.8 stone. 
2024 has been a challenge of many hospital visits due to dehydration issues and critical magnesium levels, but I’m starting to learn how best to manage all this. I tried a clinical trial, which unfortunately didn’t end well and highlighted that my bowel still isn’t in a good place to be able to have the stoma reversal operation yet. I’m hopeful that maybe next year this could happen, but if my stoma is here for life then I’m constantly reminding myself that although its challenging living with it, I’m alive and it’s enabling me to do the things I love to do. It’s just a new kinda normal.
What I’ve explained may sound scary and put people off having radiotherapy, but the only answer I can give is that without it, I doubt I’d still be here. Complications such as these are rare, but if you feel something isn’t right after treatment, keep speaking up!